A New "Normal"

So, to update from yesterday. Ethan is still not drinking. He is still violently protesting the moment the bottle comes near him. But, he is continuing to eat, so we are very thankful for that.

Last night he at 4 oz. of green bean, pear and pea baby food at church and had another wet diaper before bedtime. He slept through the night and woke up this morning with a "good' wet and dirty diaper.

He refused the bottle again this morning but with much coaxing he did eat 4 oz of his pediatric drink which I thickened with rice cereal along with his meds/vitamins this morning in his high chair. Ethan doesn't particularly care for the high chair anymore, so this of course adds to the stress of meals.

We had another dirty diaper around 9:30am before we left for our Special Connections playgroup. When we got to our playgroup Ethan ate 4 oz. of strawberry applesauce and then played and played. I think he had a good time. I know I did. It was great! We had 5 mommies and our kiddos there! I am already looking forward to the next Special Connections in April and hoping that the good weather will allow for more of our friends to come. Being around other mommies that "get it" although all of our kids have different challenges and are at different stages, is just good for my heart.

After playgroup we headed to the doctor's office. We called this morning because we wanted Doctor Dan, Ethan's doctor to take a look at him. It was a great visit, Ethan weighed in at 23 lbs. 11 oz. and there were no signs of any kind of illness or dehydration. Doctor Dan told Ethan that he needs to drink from his bottle or from his straw cup. We'll see if Ethan will listen to the doctor any more than he will me. LOL

While it is not ideal, Doctor Dan told us to just keep doing what we're doing and keep him hydrated as much as possible and to call if we stop getting at least 5 wet diapers a day.

This afternoon Ethan had 2 oz. of his pediatric drink thickened with 2 oz. of peach soy yogurt and then 2 oz. of applesauce with 1 oz. of pedialyte added to it. He also had another wet diaper.

So, while I am frustrated that at least for the moment Ethan isn't drinking, we are able to still get the fluid and calories that he needs into him. So we will continuing spooning in the fluids and reintroducing the bottle and working on acceptance of a straw cup, etc. I'm not sure I really like this new "normal" but I think that I feel better knowing now that we can keep him hydrated this way if we need to.

Thank you for your continued thoughts and prayers.


  1. It sounds like Mr. Ethan is setting his ways. You are being a great Mommy and I know it takes lots of patience. At least he is getting some substance and fluids. I'm glad he had a good doctor's visit, that has to ease your mind just a bit. Good luck and we'll be praying for you. :)


Post a Comment

Popular posts from this blog

Faces of Peroxisomal Biogenesis Disorders

#PauseForPBD -- October 5, 2017

2017 GFPD Conference Recap